Losing Myself in Caregiving

When I unexpectedly became my Mom’s sole caregiver (and roommate), that became not only my job, but my identity.

My self-image changed and caregiving took over who I was and how I felt about myself.

It was hard to see myself as a corporate meeting event manager when everything was now focused around Mom and her well-being. I often had to interrupt or postpone my work to care for her. After many years as an independent professional woman who traveled for my job, I now had to put her needs first, ahead of my own. This impacted not only my mental psyche but our financial situation since I was head of the household and provided for all our daily needs. 

Ignoring My Own Health While Taking Care of Mom

Mom loved to go out. I always took her with me when I went out and often
ignored my own health.

I wasn’t eating or sleeping properly and felt exhausted most of the time. I
put a baby monitor in her room so I could hear if she needed help, so I rarely
slept through the night. After an hour and half commute, I would come home from
work and immediately start cooking. I’m a vegan, but according to Mom, “If
there’s no meat, it’s not a meal.” So, I was preparing two different meals.
Sometimes Mom would sneak snacks (cookies, candy) and then not eat the
nutritious food I prepared. After dinner I was cleaning, and preparing for
Mom’s evening. Often I would not even sit down until 8:30 p.m., which was when
Mom would settle down.  

When I tried to put limits on her behavior for her own safety and health,
she’d say, “I’m the mom – you can’t tell me what to do!” But on some level she
knew she was changing and often would say “I’m not who I was…” Then she’d cry,
which would make me cry.

Mom was losing her independence, so I tried to give her control over her life and offer choices when possible. But as her condition changed, I gradually took on more tasks and more responsibility. With this increased responsibility came less sleep and increased irritability. I was drowning and needed help.

Learning to Ask for Help Taking Care of Mom

Finally, I had found Center for Elders’ Independence and Mom was enjoying her
time at the day center. It really helped that the Center for Elders'
Independence coordinated
all her medical care and transportation.

But I was still exhausted and demoralized. One day I was talking with a
friend and she said, “It’s OK to be angry and frustrated.” She pointed out that
those feelings matter – if you ignore them, they can manifest physically. If
you neglect one part of yourself (mind or body), the other part simmers. I realized
I was making myself ill. 

Caring for the Caregiver, a Class in Oakland

Around this time, a class called “Caring for
the Caregiver” started at the Center for Elders' Independence in Oakland. I
signed up. This was a real turning point for me. The 6-week support group
made me realize I wasn’t superwoman and that it’s OK to say “I need help,” to
acknowledge my own limitations and needs.

The class facilitators gave me tools and techniques for self-care, as well
as ways to manage Mom’s behavior. I often used what I was learning on a daily
basis.

One day upon returning home I found my mom had fallen in her bedroom. With
what I had learned that day in class, I was able to get mom up after her
fall without hurting her or myself.  Prior to leaning this
technique, I needed help to get her up from a fall and would have to call
someone to come and help.  

I found the journaling exercises were really helpful
and continued writing after the class was over. And listening to other
caregivers talk about their experiences dealing with the same things made
me feel less alone.

I also entered into therapy and found another safe place to let my feelings, fears, and frustrations be heard and accepted for what they were. Being in therapy helped me really look at and accept myself and all the changes that were occurring in my life. 

Help at Home to Care for Mom

One thing I learned was that I needed more help. After I
fractured my foot and was given a special boot to wear for months, I let the
Center for Elders' Independence know this. They assigned a home care
aide to visit every morning to help mom dress, and every evening to
assist with bathing. This lightened my load considerably, giving me more time
to get myself ready for work and wind down for the night.

I felt blessed to have really good people sharing the caregiving and the home care aides became like family. I trusted them with my mom and she felt safe with them even when I was not there.  Sometimes I hired one of Mom’s CEI aides for private duty so I could go out or attend a work function.

Mom and I both Struggled to Keep our Identities

Throughout the ten years my Mom lived with me, she and I were both
struggling to hold on to our former identities, a losing battle. For both of
us, there was a continual process of adapting to the changes in Mom’s physical
and cognitive condition. During the last few years, I had to give Mom my
downstairs bedroom when she could no longer climb the steps.

Neither of us adjusted to the change well. She would still try and go up to
“her room” at night. She never really felt that the downstairs bedroom was
hers. She would often say ‘’ I just sleep down here my room is upstairs.” She
would often try and get the caregivers to take her back upstairs after dinner.

While her new bedroom never felt like hers, her upstairs room never felt like mine, so I slept on the couch in the den. My bedroom had been my sanctuary and it was hard to give it up.

Nobody Else Can Care for Mom Like Me

Like many people, when I became a caregiver, I felt “no one else can do it
like I can” and resisted asking for or accepting help. You have to relinquish
some of your control in order to let others into your life for caregiving
tasks. But I learned that it’s crucial to claim something for yourself
so you have something left for the loved one(s) you’re responsible for.

Even so, I still had to defer some of my own needs. For example, I ignored the pain in my hips for years, postponing hip replacement surgery until after Mom transitioned. I wouldn’t have been able to be a caregiver during the months of rehabilitation following the surgeries, so I just put up with the pain. In retrospect, there may have been a way to arrange for extended respite care so I could have had the surgery sooner. But at the time, it just seemed impossible, especially since my brother in Florida refused to provide any financial or in-person help with Mom’s care. Sometimes you simply have to put a loved one’s needs first.

Find the Resources You Need to Care for Your Elderly Parent

I’m proud of the care I gave my Mom when she needed me and have few regrets.
It was a growth experience for me and provided Mom with a better quality of
life than she would have had in a nursing facility. But it was definitely a
group effort. Without the team of professionals from the Center for
Elders' Independence guiding and coaching me every step of the way,
I don’t know how I would have gotten through it. 

Download and Print our List of Resources for Adults with Medi-Cal in western Alameda and Contra Costa Counties

My Best Advice for the Growing Legion of Family Caregivers

• Ask for or find the help you need – don’t fall into
  the trap of thinking you can or must do it all by yourself.
• If friends ask if there’s anything they can do,
  give them specific tasks – respite care, bring a meal, take Mom on an outing or
  drive her to an appointment.
• There are also many
  organizations and services that can lift some of the weight off your
  shoulders, such as the Family Caregiver Alliance, Covia, Meals on Wheels,
  Center for Elders' Independence, On Lok Lifeways, senior centers, and
  paratransit. 

Don’t lose yourself in caregiving. Let caregiving be an opportunity to learn more about yourself, give back to a family member who may have cared for you in the past, and expand and enhance your identity rather than contract or submerge it. Permanence is an illusion; life is about continual change and growth.

Crystal Rivers is a Meeting & Event Manager based in the San Francisco Bay Area. She has worked in the White House and for many large corporations. A former dancer with the world renowned Alvin Ailey Dance Company and the National Ballet of Washington, DC , she has a Master’s Degree in dance therapy and still exhibits the grace, strength, and courage of a professional dancer. Crystal became her mom’s sole family caregiver in 2004, providing a safe, loving home after her mom’s health began to decline. She relied on her spiritual faith to sustain her during her years as a caregiver and hopes that sharing her story brings comfort and support to others caring for older adults. Her mother was a Center for Elders’ Independence PACE participant for 10 years.

To be continued…